Wednesday, October 31, 2012

Monday, October 29, 2012

A friend of mine has been struggling. His blood sugar has been higher than he likes. He called himself a "bad diabetic." That bothered me. Diabetes is hard to manage. Everything we do has an impact on our blood sugar numbers. Dealing with this all day every day is tough.

That was my number on Sunday after eating breakfast. It wasn't what I wanted to see. Sometimes I feel like my best isn't good enough. Maybe if I dig deeper, push harder, try more, I can manage my diabetes perfectly. And I do better... for a while. I eat lower carbs. I eat more of the right things and less of the wrong things. My weight goes down. My energy goes up. I feel like I have a handle on things and then... And then I eat breakfast with a friend and munch on this and that.

I am a human. I am a human who is fallible and limited. Diabetes management requires an extraordinary commitment. An ordinary human being doing extraordinary things is going to struggle sometimes. Perfection is out of my grasp. There are too many variables that are out of my control. But, that doesn't mean I am doomed to fail. There are other grades between F and A, places between failure and perfection. Getting a B on a test is above average. It is good enough and then some. I can't attain perfection. I can reach for good enough and then some.

Most days my blood glucose is in target. Most days are good enough and then some. I don't believe there are bad diabetics. There are people who are struggling and vowing to do better. When I vow to do better, every setback becomes an invitation to shame and remorse. I promise to do better, fail to do better, kick myself for failing, and vow to try harder. This subtracts joy from my life and hope as well. Kicking myself for wrong choices has never helped me do better. Diabetes
is painful enough. I don't need to knock myself down, too.

Lately I have been traveling a different path. Vowing to pat myself on the back for every healthy choice adds joy to my life. Did I test before I ate? Good for me. Did I count my carbs accurately? Good for me. Did I bolus? Good for me. Did I take a walk? Good for me! Praising right choices leads to more right choices. This creates an atmosphere of celebration inside. Joy multiplies day by day. People wonder why I smile a lot. That is why!

So, to my dear friend who is kicking himself and promising to do better, stop. Be at peace. Look for the right choices you are already making and savor them. Then add another right choice. And another. Every step in the right direction deserves to be celebrated.You can heal and grow. I know you can. Your friendship is a treasure to me. Remember, I have your back. Always!

Sunday, October 21, 2012

One of the first things I learned after I was diagnosed with diabetes was how important exercise is. Exercise helps increase insulin sensitivity. Exercise burns up excess glucose in the blood.

One of the first things I learned after I was diagnosed with myasthenia gravis were techniques for human energy conservation. Don't stand when you can sit. Get a family member or hire someone to take pets for a walk.

Am I the only one who is left wondering how to exercise while resting? Do I walk the dog to lower blood sugar, or have my husband walk the dog to save energy? It took me a while before I understood the obvious answer. I do both.

On good days when my leg muscles function, I take the dog for a walk in the park. Kick the leaves. Listen to the wind. Breathe deep and enjoy the autumn air.

On bad days when my leg muscles laugh instead of moving, I rest. Enjoy the feeling of stretching out my legs. Savor tea. Read a novel. Snuggle with the cat on the sofa.

Knowing I can do both helps. It allows me to tune in to how my body is feeling and do what I need to do to care for myself. Sometimes MG needs more attention than diabetes. Sometimes it is the other way around. The tough days are when I have both high blood sugar and weak muscles. Fortunately those days are few and far between.

Today was a good walking day, so I took a walk. I even participated in the Big Blue Test.

"The Big Blue Test is a program of the Diabetes Hands Foundation
that encourages people with diabetes to test their blood sugar,
exercise for 14-20 minutes, test again and share their experience on
BigBlueTest.org. For every test, people with diabetes in need receive
life-saving supplies through Big Blue Test grants that are awarded to
humanitarian diabetes charities in the US and around the world, made
possible thanks to the program sponsor."

Before I took a walk my blood sugar was 144. After a 20 minute walk it was 118. Lowering my blood sugar was as easy as a walk in the park. Try it! It works!

Days like today I feel like I am headed on the right road and going in the right direction. I don't know where the path leads, but I am on the road to find out.

Wednesday, October 17, 2012

I skipped my weekly chemo last week. After too much physical pain from the medication and not enough help, I took a step back. During the week myasthenia gravis rebounded. I expected that. By Monday afternoon my shoulders were so weak using an iPad was challenging. If I want to play the cello, I need strong arm muscles. MG is currently attacking my arms more than my legs. For about a decade it was the other way around. I had stronger arms than legs. For a while I could walk a ten step radius from the nearest chair. That was as far as I could move before I was liberated by a powerchair. Yes, liberated. Not confined.

Confined to a wheelchair makes absolutely no sense. Get up and take 10 steps away from your chair. That's as far as you are allowed to walk today. Do you feel confined? Trapped? I did. That is as far as I could walk for months. The misery I felt goes beyond tears. Only music can speak it. I was trapped in my house. My powerchair freed me from being on house arrest. For 10 years I used a powerchair until one morning MG moved from my legs to my arms. Why the move, I have no idea. It just stopped attacking my leg muscles and moved away.

With MG primarily in my shoulders walking is easier. Braiding my hair is harder. Standing to brush my teeth is possible. Playing the cello is tough. I would like to live in a world where I can walk and braid my hair, stand up to brush my teeth and play my cello. I don't know if that world is possible. I do know that skipping chemo last week allowed me some inner peace for a bit. Skipping chemo sick for a week was a relief. MG antibodies rebounded, so I got weaker. But, I think it gave yesterday's chemo pills antibodies to seek and destroy. Other than attacking me, the medication attacked diseased white blood cells.

I felt tired. I felt dizzy. I felt really nauseated. However, the full body pain wasn't there, so chemo wasn't too bad. What a relief that was. I followed diabetes sick day rules and drank Coke for breakfast. It helped and didn't spike me at all. For some reason, my Coke and insulin cocktail never spikes my blood sugar on chemo day. Maybe MG and diabetes have a chemo day truce? Or maybe insulin works really well on pure sugar without fat to slow it down. I spent the day resting and now I feel much stronger. I can use my arms and my legs today. That is no small thing. Today is a rare day.

My health is fragile, like this orchid.

Photo Credit: Steven Smith

Fragile things need to be looked after carefully. Taking a week off from chemo gave me a chance to breathe and rest. I am back on track with the medicine and more in balance with my life. I can't heal MG or diabetes, but I can take the time to heal my spirit. I am glad I did. I feel rested and ready to meet whatever comes my way.

Friday, October 12, 2012

I skipped my chemo meds on Monday night to give myself a much needed break. So far MG has stayed reasonably quiet. My mood has lifted considerably. I am glad I gave myself the break I needed. I just wish I didn't have to get backed so far into a corner before realizing I have other options. Maybe next time I will figure out I need a chemo break a lot earlier. Maybe. But, probably not. I am glad I have family and friends who look after me. I couldn't do this alone.

I used my break this week to spend more time outside. Taking time to enjoy nature reminds me to take time to enjoy my life.

Sunday, October 7, 2012

In August 2005 I started treating my myasthenia gravis using cytotoxic medication. I started an experiment that lasted until January 2007. It involved moderately high dose pulses of IV chemotherapy once every three weeks.

I wrote that so clinically. Reality was I spent six hours in the treatment room having chemo pumped into my veins. I spent the next five days on the couch. It took a full week to recover from the chemo pulse. One week of illness traded for two weeks of muscle strength.

One week sick, two weeks feeling better. One week sick, two weeks feeling better. We were hoping chemo pulses would put my MG in remission. When that photo was taken I had almost no white blood cells left and I was anemic. I lost my hair, most of my eyebrows and my eye lashes. Chemotherapy wiped out my immune system. It caused caused mild dementia. What the chemo did not do was put my MG in remission. We did 24 pulses and I never did go into remission. 18 months of medical torment for little gain. The experiment stopped in January 2007. My medical team changed me over to a new chemotherapy regimen.

Instead of IV pulses, I take chemotherapy pills once a week. I've done this faithfully since 2007. Every Monday night I swallow a handful of tablets and on Tuesday I feel awful. The trade of muscle strength in exchange for feeling poisoned on Tuesdays has never been easy. I feel like I am holding a tiger by the tail. I don't like holding on, but I am terrified of letting go. I know what MG is capable of doing to me. I have been too weak to swallow, hold up my head, talk, move, dress myself. I have been too weak to get up from bed. I know MG. I also know that chemotherapy treatment is just as hard.

My last three chemo Tuesdays were spent on the edge of tears. Every inch of my body felt bruised. Every movement, no matter how small, hurt like being hit with a small ball-peen hammer. Nothing made the pain better. Lying absolutely still in bed, afraid of using a straw because it would hurt, or crying because my iPad hurt my arms, is more than I can deal with. It's more than anyone should have to deal with.

The treatment has become as bad as the disease. Once I got six days of feeling better. Now I feel chemo sick well into Thursday afternoon. Three days sick exchange for four days well. Is this a fair trade? Instead of enhancing the quality of my life, treating MG is lowering it.

As of 2012, myasthenia gravis is incurable. Medication cannot heal me. I already tried intensive chemotherapy and that didn't stop my MG. It remains catastrophic despite everything I have tried to fix it. I would be saddened by this, except I am too tired from 15 years of tiger wrestling to feel sad.

Right now more medicine isn't the answer. Thinking about my quality of life is the answer. I need to enhance my quality of life because for the past few weeks it has been too low. I have been tired and depressed because of the pain from chemo. It has become a shadow in my life.

Last Tuesday while I was lying on the bed next to my husband and trying not to cry, Steve suggested a chemo break. Evelyn came into my bedroom and suggested the same thing. Maybe they are right. Chemotherapy is poisonous stuff and lately I have been feeling poisoned by it. I have taken breaks before to give my body a chance to heal. Perhaps I need another break. My quality of life is too low, and it isn't MG that is causing it. Right now the treatment is as bad as the disease. I am in a tough spot. It is a good thing that I am tougher.

Wednesday, October 3, 2012

I was watching Netflix on my computer when I started feeling woozy. A little dizzy. A little sweaty. I felt like I was going low. I reached for a can of Coca-Cola and drank it. I expected to feel better quickly. When I didn't feel better I decided to test.

This was officially scary.

I didn't feel THAT low. I felt 40's low. Numb face, numb fingers, can't think or focus on what to do. Maybe my meter freaked out. Or maybe the Sugar Reaper showed up in my living room. Either way a blood sugar of <20 was hopefully a once in a lifetime reading.

Somehow I managed to not pass out. I drank several cans of Coke and stayed still on the sofa. Next time I tested I was 126. Then 196 and then... well, and then XPU the pump and I had a chat. Fixing a BG of <20 created a BG of >220. I didn't care. I still don't care. Sometimes the Rule of 15's doesn't apply.

This morning I woke up at 170. Normally a BG of 170 when I get up makes me angry. This morning I was just glad to wake up at all.

Marie Smith

Marie Smith is a writer, cellist and talented public speaker. She is the author of Life Music: Lessons Learned At The University of Catastrophe. And her new book Life Etudes: Studies in Thriving At The University Of Catastrophe

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Disclaimer

I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

If you are enrolled with your own major at the University of Catastrophe, please consult your doctor, therapist, attorney, auto mechanic, veterinarian, plumber, dietician, arborist, acupuncturist, manicurist, mother, local dairy council, shoe shine boy, or other equally qualified professional, for advice and assistance.

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